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Deathbed confusion: Struggling with decisions at the end of life

When it comes to caring for the terminally ill, Catholics sometimes struggle to decide when enough is enough.

Last December Tina and Jeff Jankowski were celebrating Christmas at home in Granger, Indiana, with their daughter, Erin, home from her first semester at college, their son, Drew, a middle school student, and Tina's mom, Irene Bradley, who had lived with them for almost eight years. "We were all sitting around talking," Tina remembers, "and Mom said, ‘Boy, I've had a great life. When God finally calls me home, I'll be ready.' " Bradley was 83, and despite a mild form of dementia that required some care from her family, she was self-sufficient and healthy.

So when Tina and Drew arrived home one afternoon a few weeks later and saw Bradley's untouched breakfast on the kitchen table, they knew something was wrong. Upstairs, they found her on the bedroom floor, unresponsive. Tina called for an ambulance and her mom was rushed to the hospital, where the Jankowskis learned she had suffered a massive stroke. Bradley couldn't swallow or speak, the right side of her body was paralyzed, and her blood pressure was soaring. The doctors said there was nothing they could really do for her.

But Bradley persevered, and two days later doctors inserted a feeding tube though her nose and started talking to Tina and Jeff about long-term options-including a permanent gastric feeding tube, which would require a medical procedure to insert it directly into Bradley's stomach.

"We had talked about it before, and she said she didn't want to be kept alive by machines," says Tina. Bradley also had a living will that indicated she didn't want to use any extraordinary means to prolong her life. "When it came time to make the decision on surgically inserting the feeding tube, I struggled with it," Tina says. "She had said one thing-the document said one thing-but was it the right thing to do? I thought, ‘If I don't do it, am I going to starve her? Am I killing her?' "

"We were struggling with what the definition of ‘extraordinary means' meant," says Jeff. The Jankowskis looked in books and went online not only for legal and medical clarification but also to see exactly what the Catholic Church has to say about end-of-life decisions. They came away just as confused as they were before their research.

"The church teachings on this seem almost impossible for a layperson to understand," Jeff says. "I can't decipher what they mean, and I'm a lawyer."

Hanging in the balance

Unfortunately the Jankowskis have plenty of company. Along with countless individuals and families trying to make sense of how to provide the best care and most appropriate treatment for a loved one reaching the end of life, there's confusion within the ranks of the church as well.

That confusion has been growing over the past three decades despite a well-established Catholic tradition that has guided choices about end-of-life care and treatment for four centuries.

"On the one hand, the tradition says we don't allow euthanasia. We always care for the patient," says Father Thomas Nairn, O.F.M., senior director of ethics for the Catholic Health Association of the United States (CHA), an organization that supports Catholic health systems, hospitals, and long-term care and other continuum-of-care facilities. "On the other hand, the Catholic tradition has not been that you have to do everything possible to keep a person alive."

On the spectrum that has euthanasia at one end and life-at-all-costs at the other, the Catholic tradition has been squarely in the middle, highlighting the dignity of the person, no matter his or her condition.

Part of the confusion and fear about making the wrong decision stems from three high-profile, controversial, and highly unusual cases-most recently that of Terri Schiavo, whose 15-year saga ended with her death in 2005, but also Karen Ann Quinlan in the 1970s and Nancy Cruzan in the 1980s. All three were young Catholic women in a persistent vegetative state (PVS) whose health care decisions by family members regarding ventilators and artificial nutrition and hydration (ANH) became entangled with the U.S. legal system. Even though a tiny number of people are affected by PVS (1 in 10,000 in the United States, compared to 1 in 100 affected by Alzheimer's), the publicity around Schiavo was so heated that the case continues to be at least in the back of the minds of many families who face far different situations including ANH.

Add in the more recent calls from some in the Catholic hierarchy for a broader use of feeding tubes (see page 16) and the recent hullabaloo in the United States around end-of-life decisions in the health care reform debate (think so-called "death panels"), and a typical end-of-life scenario can feel like a spiritual and emotional minefield. "But decisions still have to be made," Jeff Jankowski says.

Extraordinary means

When the Jankowskis stepped away from the computer, they started asking people they knew for help. Tina, who works at the University of Notre Dame Law School, first looked at some articles by Carter Snead, a professor there who has researched end-of-life decision-making. Then she and Jeff spoke with Father James Foster, C.S.C., a priest and physician who helped explain the medical and religious nuances of their situation, and their pastor, Father John Deriso, C.S.C., who prayed with them and offered personal support.

This team of legal, medical, and spiritual advisers was able to help the family determine that artificial nutrition and hydration would not be extraordinary means for Bradley at that point. The benefits of a gastric feeding tube outweighed the burdens; it would allow her to do occupational therapy, speech therapy, and physical therapy. Hence they were morally required to choose it.

"We spent a lot of time talking about it and praying about it," says Jeff, "and we made it past that hurdle."

But the hurdles kept coming. After a month in two different hospitals, Bradley was moved to a nursing home and continued therapy for three months. When she wasn't showing any sign of improvement, the family set a goal to get Bradley back home. The nursing home staff trained Tina how to care for her mom, including how to administer feedings every four hours. "We said we would do whatever it takes," she says.

Bradley continued therapy for several weeks after she returned home. Then Tina came home one day to find three therapists trying to work with her mom, who had been battling pneumonia. Her mother, who had made no progress with the therapy, looked exhausted. "That was the moment I thought, ‘What am I doing to her?' "

Jankowski knew that she wanted to make her mom comfortable and let her enjoy the time she had left. The family switched Bradley from regular care to hospice care-a choice that doctors had mentioned before, but one the family had not been ready to make.

Benefit and burden

Despite the loud debates and conflicting messages about what should or shouldn't be done when the end is near, the bedrock of the tradition is that Catholics are required to use all means-medicine, surgery, or treatments-that offer a reasonable hope of benefit and can be had and used without grave inconvenience.

Those means are called "ordinary" or "proportionate," and while tube feeding may fit into that category, the church teaches that there are also some situations where it doesn't (see page 16).

What about when decisions are particularly murky? Would a feeding tube be ordinary means for someone with advanced Parkinson's or terminal cancer, for instance? "Here's where we as church people and ethicists need to defer to physicians," Nairn says.

"When the body begins shutting down, what I hear from physicians-including priest physicians-is that it doesn't need nutrition and hydration, and not having that tends to dull the pain," Nairn says. "By forcing foods and fluids it increases pain rather than helping the person. It gets back to burden and benefit. It can be an excessive burden."

The principle of benefit and burden requires individuals or families to decide if a particular treatment is worth pursuing based on one's physical, spiritual, and mental health at the time of the decision. The very same treatment that one person deems beneficial-and therefore ordinary, or morally required-may be determined as burdensome, and therefore extraordinary and generally not required, by the patient in the next room.

This doesn't make a decision any easier. It does rule out euthanasia at one end of the spectrum or doing everything possible to stay alive at the other. "The middle position is never going to be as neat as the two extremes," Nairn says. "Even though we might argue and we might not agree and it's not simple, these decisions can still be made responsibly, and Catholic moral theology can help to do that."

The "right" answer-after one has considered the benefit and burden of a treatment option and determined it to be ordinary or extraordinary-may be found in the intention of the decision. While offering treatment-say, pain medication-is always morally permissible when the intention is to give someone a better quality of life, it's not morally permissible when the intention is to cause death (with a deliberate overdose, for instance).

Likewise, withholding treatment with the intent to cause someone to die would not be morally permissible, but it would be acceptable to forgo or end treatment in order to let nature take its course and not to prolong the dying process.

Rest in peace

A few weeks after Irene Bradley began hospice care, her health declined to the point where she stopped tolerating the feedings. Her daughter called hospice to find out what to do. "I wanted to continue, but they told me that it wasn't helping her anymore," Jankowski says. Hospice said that her organs were shutting down, and to gradually give smaller amounts of food until feeding was phased out.

"Hospice has a saying: A lot of people think you're cheating death by continuing feeding, but you're really cheating life," Jankowski says. "The body's trying to say ‘no more,' and the feedings are causing the organs to think they have to keep working. You're cheating her from life, from the life she has left."

For Erin, who was away at school in New York, the thought of stopping her grandmother's feedings was particularly upsetting as it seemed that it would be directly contributing to her death. She asked her parents if they talked with a priest, if it was OK.

That concern is a common one, Nairn says. "It can be extremely difficult for family members-they want to do what's right, but what seems right may actually be burdening the patient. This is where families and physicians need to talk with each other."

Bradley hung on for longer than anyone expected; during her last week one of the hospice nurses said, "I don't know what's keeping her here-there's no reason she's still with us." But the nurse also told the family that there was no reason why Bradley couldn't hear them, and so the Jankowskis took the opportunity to have everyone home to say their goodbyes.

When Bradley finally passed away on a Sunday, it was nearly a week after she had stopped feedings, and six months after the stroke that doctors didn't expect her to survive. It was, Tina says, a lesson in patience and prayer: "It's not when we say we're ready, it's when God calls us home."

This article appeared in the November 2009 of U.S. Catholic magazine (Vol. 74, No. 11, page 12).